POS0205-HPR CHARACTERISATION OF RESEARCH PARTICIPANTS: A PRELIMINARY EXPLORATION USING ELECTRONIC PATIENT CASE RECORDS (EPCR)
Authors: Y. Ahmed, E. Hawkins, R. Wilson, H. J’bari, L. Tomson, R. Taylor Gotch, M. Butt, M. Castelino
Journal: Annals of the Rheumatic Diseases (2023)

<h3>Background</h3> A priority of the National Institute of Health Research is to ensure that research is inclusive at all levels. Underrepresentation of specific demographics affects the generalisability and external validity of trial findings. Clinical research participants should be a proportional and accurate representation of the patient population using the healthcare services. To ensure meaningful outcomes of clinical research, studies require engagement of participants from varied demographics. In April 2019 a new EPCR system (EPIC) was introduced at University College London Hospital (UCLH) that allows data searches of up to 10,000 records. As a first step towards incorporating these priorities in our research work, we explored the EPCR system to establish the characteristics of our research active population. <h3>Objectives</h3> 1. Compare the demographic identifiers of rheumatology patients at UCLH against the patients that have participated in rheumatology research at UCLH. 2. Establish underrepresented groups within the research cohort. <h3>Methods</h3> We extracted a random dataset of 10,000 patients who were associated with the rheumatology department using the electronic patient record database and identified the subgroup of research participants. The demographic identifiers: ethnicity, age, gender, and postcode were extracted for the entire dataset. The deprivation indices were determined using postcodes (1 most deprived, 10 least deprived)<sup>[1]</sup>. Ethnicity, age, gender, and indices of deprivation were compared between the groups. For descriptive analysis of this work we used the percentage of the population for each identifier of the rheumatology cohort and compared this to the research subgroup. <h3>Results</h3> There were 990 (9.9%) patients who were recorded as a participant of a research project. The ethnicities that had a higher percentage representation in the research subgroup were Black Caribbean (2.96% v 4.65% difference of 1.68) Other Black Background (1.14% v 2.53% difference of 1.38) and Other Mixed Background (1.29% v 2.32% difference of 1.04). Other White Background (9.49% v 7.27% difference of 2.22), Not Stated/ Unknown (2.99% v 1.11% difference of 1.88%) and White British (56.24% v 54.95% difference of 1.29) ethnic profiles had a lower percentage representation in the research subgroup when compared to the rheumatology cohort. All patients had a recorded gender of male or female. The rheumatology population was 60.97% female compared to 76.26% in the research subgroup. The deprivation index was 5.39 for the rheumatology cohort compared to the research population of 5.24. A difference of 12.5 years was seen between the median age of rheumatology patients (61 years) compared to research participants (48.5 years). <h3>Conclusion</h3> From this random dataset analysis approximately 10% of the rheumatology population participated in research. The demographic profile of ethnicity and indices of deprivation were similar across both groups, however proportionately the research subgroup is younger and has higher representation of women compared to the rheumatology population. Limitations of this work include exclusion of research participants prior to the installation of the EPCR, incomplete documentation of research participation within EPCR and sample size limited to 10,000 of the rheumatology population. However, selection bias is reduced due to the large random sample size and generalisability and representativeness is an advantage of this. In view of the low uptake of research participation, it is very important to identify barriers to increasing engagement and involvement in research. Further research is warranted to explore if there are particular age groups that are underrepresented and establish reasons for lack of engagement of men in rheumatology clinical research. <h3>Reference</h3> [1]https://imd-by-postcode.opendatacommunities.org/imd/2019, last accessed on 15 Jan 2023 <h3>Acknowledgements:</h3> NIL. <h3>Disclosure of Interests</h3> None Declared.